Still In Shock

After realizing this nightmare is real, I have finally accepted membership into this club nobody wants to be a member of.  There are a few images etched in my mind forever and right at the top of the list is the phone call that said, "You have cancer".  What a way to celebrate Christmas! Since that time, as I weigh my options, I was fortunate to find this forum during my research.  It has been a Godsend!  I have been reading posts after posts the past few days.  Some have made me cry, others have given me a laugh but most importantly, many have given me hope!!  Thank you to those of you who have shared your stories and your journey to somehow help us newbies get through this hell.  Right now, I am strongly considering  the Da Vinci robot but I still have a visit with an Oncologist before I decide for sure.  With my numbers, I likely will choose surgery because I have something in my body that wants to kill me, and I don't want it there.  I am 58 years old.  My PSA has always been low, below 1.  However it went from .1 to 4.6 in 18 months so I had a biopsy.  Four out of 12 samples were positive.  All cancer is located in the upper left quadrant.  3+3 50%, 3+4 35%, 3+4 35% and 3+3 25%.  I am sure I will have many questions over the coming months, but the one topping my agenda right now is how many of you did or did not have scans to see if the cancer has spread?  My Urologist recommended against it saying because of my numbers, the statistical chance of it having spread is very small.  But he also said if it gives me peace of mind, then go for it.  My wife wants me to, but so far I am saying no.  Mostly because of what the doctor said but also because I don't think I could handle news worse that what I already received.  In any case, I hope to share my journey with all of you as well.  Hopefully in the coming months I will be able to offer encouragement to others in this club the way you have offered it to me. 

With your PSA numbers the scans would almost certainly be a waste of time and money. If your insurance will pay for it and you think it'd make you feel better you can get the scans but if I were you I'd use that time and money getting more opinions on your treatment options. Be sure you find someone to talk to you about brachytherapy (probably combined with adjuvant or neo-adjuvant hormone therapy). At least ask your medical oncologist about the possibility.

Oh, and welcome to the worlds worst men's club. Everybody's very nice here but the chairs aren't comfortable and the guys with no testosterone tend to hog the remote so there's never anything interesting to watch on TV.

Welcome tdnjam. So sorry you have to be here.

With my numbers pre-surgery (G8 and lots of PCa in the samples) my Sx would not have considered operating without having me scanned first. Too high a likelihood that the scan might show metastasized PCa. It didn't and of course that was good news. And, I'm one of the lucky ones that had the Gleason score downgraded post-op. One of the good things about having had RALP ... having someone able to examine the little bugger. I am however doing battle with ED, so there is the natural second guessing that everyone recommends against. But it is unavoidable ... just not something to dwell upon.

For you, the likelihood is probably near zero of metastasized PCa. But if it had, you would want to skip the surgery. I think those are the factors you need to balance.

The scan itself is trivial, so don't let that be an issue.

Hi there,

Yes it is a huge initial shock to hear the word cancer. When I called my local urologist's office to get the results of my biopsy, the assistant initially told me it was benign. As I felt the rush of relief coarsing through my body, she abruptly said, "wait a minute, I've got the wrong report." Turns out she was reading someone else's report. When she finally found mine, she dispassionately said one word, "malignant." Imagine the 180 degree reversal of profound relief at the word "benign" being replaced by the cold shock of hearing the word "malignant."

So, one way or the other, it is a shock when first learning of the diagnosis.

In your case, except for the one Gleason 7 reading, all looks very good for you. My urologist at home (who did the biopsy) did send me in for a bone scan and CT of the abdomen. He said in advance that they would come out negative. He was just establishing baseline readings.

When I saw a urologist at Mayo Clinic the following month, he said he could not understand why my local urologist had bothered to order those tests because mine obviously was a low risk, slow growing, early case.

This sounds the same for you. If you don't want to take those additional tests, don't take them unless your doctor feels that it really IS necessary.

If you are contemplating a prostatetcomy (complete removal of the prostate & associated glands), be VERY insistent that the surgeon have performed at least 300-400 DaVinci procedures. Same with the traditional, open method. There is a long learning curve and you want to make sure that you are not part of one.

Good luck in whatever treatment you choose. Surgery or radiation, you will probably be looking at a cure.

Chuck

July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate. Right
posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98 grams, tumor 2 grams.
Catheter out in 7 days. No incontinence, occasional minor dripping.
First post-op exams 2/13/12, 9/10/12 - PSA <0.1.
Only semi-erections so far, with continued improvement.

tdnjam,
Welcome. You've landed in the right place. The only reason I would do the scans is to get a baseline for the future. Otherwise figure out which treatment is for you and pursue it. Good luck!

tdnjam,
I'm so glad you discovered this site. Although I mostly lurk at everyone's postings, this site has been my anchor through my pc diagnosis, treatment and recovery. When i heard cancer i immediately wondered how far it could have spread. I too wondered about getting a scan but my urologist also said it would shock him if they able to detect anything. He cautioned that it was probably a waste of time and $$. You are doing the correct thing by becoming educated and asking questions. The odds are stacked in your favor. Best of luck in your journey

tdnjam:

With your numbers, scans probably wouldn't show up and microscopic CaP cells outside the prostate, so they won't tell you much, if anything.

Please check out CyberKnife radiation treatment. Go to the Accuray website ( manufacturer of the machine). It's just as effective as other treatments and with lower short & long term side effects. Please be advised that surgical removal of the walnut is no guarantee that CaP won't return, since there may be CaP cells already out side the gland.  There is about a 4% chance of problems down the road after any treatment. Sorry, that's the hand we have been dealt.

Good Luck !! Please don't be pressured into making a quick decision about what to do next. Try to relax and collect your thoughts.

You have months, not weeks to make a decision ( according to John Hopkins Urology ).

Here is a link to some info. that may be useful, I have updated it recently :

http://members.triton.net/vandenbe/CAP/CaPArticles_AUAGuidlines.htm

 

One other thing to caution you about is the reliability of treatment data on the website of companies that manufacture machines used in surgery or RT for prostate cancer. Before I was a member of HW and after my initial consult with URO I spent days on the web site for the manufacturer of the Davinci robot reading hundreds of testimonials of patients who had  RALP with the machines. From these testimonials you would think RALP was the cure all for PC with no side effects. Almost every testimonial was from a patient with none or minimal continence issues and all had good strong erections 6 months after surgery.  What I know know and what most of us know in this forum, this is so untrue and that our individual DX and the skill of the surgeon on the Davinci has more to do with side effects than any thing else.

Terry

tdnjam: sorry you needed to join but your surely welcome. To answer your question: No, my doctor didn't even mention scans to see if it has spread. I too had four cores hot. As I recall one was 50%, another was 25% and the other two were single digits. I bring this up because they are fairly close to your numbers. Also, I ended up being a gleason 7.

Best of Luck

I also did not have scans before surgery. At the time, my PSA was 9 and my biopsy results showed Gleasons of 3+4. My Uro advised that scans would be very unlikely to show anything.

I had fewer treatment options available to me when I was originally diagnosed in 2002. A few docs were doing 'keyhole" surgery rather than open RP, but DaVinci hadn't yet arrived. Brachytherapy was an option, but was not as well established or well-documented in terms of long-term-results as it is today. Given my choices, I went with open RP. Though if I were making the decision today I'd probably be on the fence deciding between DaVinci or Brachy.

I hear you about the shock of hearing "cancer." Though at the time I was probably less shocked than 15 years previously when I was diagnosed with Melanoma thanks to a nurse practitioner who said she really didn't like the look of a mole on my back. The good news with that one, unlike PCa is that if you get it early enough and are still walking around a couple of years later, you can be confident that you have an actual cure. With PCa, on the other hand, even if you have a very good prognosis, you are always kind of looking over your shoulder for the rest of your days. Like most of us, I have a bit of heightened anxiety around PSA testing times (my wife says she worries enough for both of us), but most of the time I'm just getting on with my life, as I'm sure you will too, once you get through whatever treatment you choose and your first few post-treatment PSA tests.

Jim

Tdnjam
sorry you have to be here , there is a DR. Allen Morey at UT Southwestern Medical
Center in TX who is a very good doctor . I saw on pass post that a few member
had surgery by him . He done an open RP on me when he was a Captain in the army.
My surgery was done in March 1992 over 21 year ago. If you are close to TX check he
out . That if you decide to have surgery , I am sure there other very good doctor in other area. The side effect of ED and Incontinent can be fix with a penile Implant and AMS ,also there are pills and shot for ED.
Good luck to you

tdnjam:

If you are interested in minimal down time for treatment and maximum effectiveness with low side effects, don't forget to check out CyberKnife.

From start to finish, you are looking at 2 weeks. about three appts. before treatment starts and the 5 appts. on the table for treatments. You can go to work after each treatment or play golf as one testimonial claims. Good Luck.

Jim, thanks for your suggestions. I have an appt with an Oncologist in a couple of weeks. I am keeping all options open. Sure would be nice if there was an option that was clearly the best so the decision would be easier to make. On the other I guess it is good that there are options and I am not faced with making a decision that may not be the best, but it is the only one available.